Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Should I Re-Test?
0

8 posts in this topic

Okay, here's my story:

All growing up I had the stomach flu every year until my late teens. I had bronchitis and strep a lot as well.

When I turned 18, I was a nanny for my aunt up in Michigan and suddenly developed a severe stomach issue; I lived on yogurt for several weeks. I went to the doctor and they did several tests, including a stomach x-ray that required me to drink a paint-like substance. Nothing. I don't know what made it subside, but after several months, it finally did. I didn't ever connect it to something I was eating.

In early college, I developed temporary paralysis and passed out a lot. I had several MRIs, CAT scans, and EKGs. Nothing. One doctor said stress, one said migraines, another said epilepsy. Stress did seem to affect it quite a bit, and I had a very rough few years in college. Lots of stress and trauma, and suffered from depression.

Still had the problem off and on for years, but have not had this issue for a couple years now. However, about a year ago or less, I suddenly had a major migraine and couldn't speak. I was taken to the ER from work and just given migraine meds. Getting two of my wisdom teeth removed seem to have helped that situation mostly, though I still get headaches fairly frequently.

2 years ago I fell and injured my knee at work. I went to an orthopedic, who told me I have arthiritis. I'm in my twenties.

About 2 or 2 1/2 years ago, I developed mild gas and bloating. Constantly. Pretty much 24/7. In the last few months it has gotten much more severe, including severe cramping. A few weeks ago my arms started turning purple and my hands were tingling and going numb. I had blood tests done and was told my vitamin D was low. Nothing I could find online attributed D deficiency to my symptoms, but what concerned me most was that my D was low at all. I have D in my multi-vitamin, which I take every day, and I also take an additional D supplement. I also drink a lot of D fortified milk (lactose free as of 5-6 months ago). I found celiac when I was researching causes for D deficiency.

I had my doctor test me for celiac and they took blood last week. I got the call today that my test came back NEGATIVE. But I have so many symptoms! Gas, bloating, cramping, constipation, fatigue, anxiety and depression (for no reason), and frequent infections (respiratory and urinary). Not to mention, the arthiritis in my twenties, and my medical history. No one in my family has been diagnosed with celiac, but one of my brothers has been describing smiliar sypmtoms to me. He turned 20 this year and has frequent stomach problems.

I've decided to pursue a gluten-free diet, regardless. But should I insist on a biopsy or another blood test? I just want to know why I'm sick all the time! I imagine my boss would too.....

0

Share this post


Link to post
Share on other sites


Ads by Google:

Insist on the biopsy before you start the diet. Not only is it a good chance to look for any other issues, but it might give you an idea of what is going on. Genetic test wouldn't be to far off either.

1

Share this post


Link to post
Share on other sites

You might want to get a bone density test done. Bone density is often low in untreated celiac disease.

0

Share this post


Link to post
Share on other sites

Hold off on removing gluten until you are sure all testing is complete.

Request written or electronic copies of the tests that were run. If you are unsure what they mean, post them here - many of us can help interpret. Many doctors only run one or two of the complete celiac panel.

I would push for complete blood tests along with an endoscopy.

Good Luck to you :)

1

Share this post


Link to post
Share on other sites

I'm in a similar situation, having lots of symptoms but every test comes back negative. The only thing that's shown up for me is low vitamin D and low ferritin, which seems odd since I've been taking high quality vitamin D3 supplements for years. The low ferritin was surprising because I cook with a cast-iron skillet and eat iron-rich foods, often with citrus or vitamin-C-containing things which is supposed to help it be absorbed.

All my symptoms can't be explained by vitamin D and ferritin being low. But all the tests come back negative. I had a relative who tested negative for celiac but later had to have intestinal surgery. She was diagnosed with celiac based on the damage they found to her intestine. I've heard of many cases of false negatives from looking around online, especially on these forums. Sometimes it's really hard to get diagnosed.

I know this process is really frustrating but do lots of research and don't give up!

I've found in my research that there's a correlation between epilepsy and celiac disease. My younger sister has blood-test confirmed celiac (her numbers were so high they didn't bother to do a biopsy) and she has migraines as well.

1

Share this post


Link to post
Share on other sites




Hold off on removing gluten until you are sure all testing is complete.

Request written or electronic copies of the tests that were run. If you are unsure what they mean, post them here - many of us can help interpret. Many doctors only run one or two of the complete celiac panel.

I would push for complete blood tests along with an endoscopy.

Good Luck to you :)

Thanks!! I requested the test results, so I should have them in a couple days. I also have an appointment with a GI today at 12:30. Crossing my fingers! Also, realized that I have recently developed pits in my nails (but no skin rashes) and hair loss, and this morning I have hives on my stomach area. Getting interesting! Lol. I also am struggling with depression pretty bad, but I am very hopeful.

Really, bottom line is, even if they come back and say "negative" again after the biopsy, I'm still going to treat myself as if I have celiac. I am confident it will clear up on a gluten-free diet.

Thanks so much for your input! I'll be back with test results later! Looking forward to becoming an active member here.

0

Share this post


Link to post
Share on other sites

I'm in a similar situation, having lots of symptoms but every test comes back negative. The only thing that's shown up for me is low vitamin D and low ferritin, which seems odd since I've been taking high quality vitamin D3 supplements for years. The low ferritin was surprising because I cook with a cast-iron skillet and eat iron-rich foods, often with citrus or vitamin-C-containing things which is supposed to help it be absorbed.

All my symptoms can't be explained by vitamin D and ferritin being low. But all the tests come back negative. I had a relative who tested negative for celiac but later had to have intestinal surgery. She was diagnosed with celiac based on the damage they found to her intestine. I've heard of many cases of false negatives from looking around online, especially on these forums. Sometimes it's really hard to get diagnosed.

I know this process is really frustrating but do lots of research and don't give up!

I've found in my research that there's a correlation between epilepsy and celiac disease. My younger sister has blood-test confirmed celiac (her numbers were so high they didn't bother to do a biopsy) and she has migraines as well.

Very interesting! Thanks for your feedback. I have an appointment with a GI today, so we shall see what happens. Also have an appointment later in December to get allergy skin tests. My low vit D is what started me on this research, because I have D in my multi-vit, take an additional D supplament every day, and drink D fortified milk, so I was like "what?" D didn't explain my symptoms either, but I've decided to go on the gluten-free diet (and probably diary free, at least for the first few weeks), no matter what the diagnosis is.

Thanks so much for your response!

0

Share this post


Link to post
Share on other sites

Thanks!! I requested the test results, so I should have them in a couple days. I also have an appointment with a GI today at 12:30. Crossing my fingers! Also, realized that I have recently developed pits in my nails (but no skin rashes) and hair loss, and this morning I have hives on my stomach area. Getting interesting! Lol. I also am struggling with depression pretty bad, but I am very hopeful.

Really, bottom line is, even if they come back and say "negative" again after the biopsy, I'm still going to treat myself as if I have celiac. I am confident it will clear up on a gluten-free diet.

Thanks so much for your input! I'll be back with test results later! Looking forward to becoming an active member here.

Low D and hives on my stomach that spread to my arms and feet were what finally helped get me diagnosed. I never had the rash biopsied - when I removed gluten it never came back.

Take pictures of skin issues and any drastic bloating - these were very helpful during my diagnosis.

Again - welcome - glad you have joined us :)

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,676
    • Total Posts
      921,696
  • Topics

  • Posts

    • I doubt it. I would think that would be a questions for the company that make them.    But if smoking makes you feel bad....and you are able to quit for several weeks at a time....why go back to it?
    • Hi. I've noticed that after a break of smoking (2-3 weeks) I feel bad, when I begin to smoke again.  Maybe they contain some additives with gluten??
    • Thank you everyone! Good to know I am not alone with this. I am asking for a referral to a new cardio. Hopefully it will all go away the longer I am gluten-free. It started up in February/March after a gluten challenge and mostly vanished until July when I had a lot of shortness of breath. It absolutely was CRAZY just a few days after the glutening. I was gasping for breath and the beats were all over the place just walking through a parking garage and I was only mildy anemic at the time.   But it seems to "quiver" and do funny things for a bit still. I sort of theorized maybe it was inflammation in the heart because after this last glutening, my head felt like it was in a vice and my eyes would sting or get stabbing pain hurt (that is finally going away thankfully...knock on wood).  The head/eye pressure I learned also happens to my sibling who has celiac and his naturopath told him that sometimes the brain gets inflamed. Hopefully I can meet the new cardio soon and feel confident that he is taking me seriously. It is sort of difficult to feel confident in the opinion of a doctor that your ticker is ok when they are not really listening and end up making you cry. LOL. A friend of mine in the mental health field recently listened to my story of doc after doc and test after test and said that it was akin to the folk story of blind men describing an elephant. A group of blind men all feel one part of an elephant (tusk, tail, ear, tail) and then compare notes only to find they all disagree.  In some  versions they argue intensely. In other versions they have to collaborate and listen to each other in order to "describe" an elephant.    
    • Good afternoon! I am new to this board and fairly new to researching Celiac Disease, although I had a general idea what it was. My health has become a huge mystery to me, and it's one that I am desperate to solve. The biggest issue right now is horrible, life affecting fatigue. I have been dealing with it for several years now- as many as 5 to 6. It has gotten progressively worse, and nothing at all helps. Sleep apnea has been ruled out. Intestinal issues are something I have dealt with for almost two decades. I'm 45, but I've already had two colonoscopies as well as two endoscopies. My first endoscopy was as a child for persistent, severe stomach pain. My last colonoscopy and endoscopy was two years ago. The only thing that has come from those is an Irritable Bowel type condition and GERD, which is pretty bad. My bowel movements have always been crazy. They can be very normal and healthy to completely crazy. I've had periods of persistent diarrhea to occasional constipation, which is a fairly new thing within the last year. Last week, I went from having diarrhea that morning to hard, round balls of stool by that evening. My most common stools here lately, though, are not quite diarrhea, but more fluffy, large piles. Gas is an ongoing, daily issue for me. I have copious amounts of gas every day no matter what I eat or drink. Most of the gas in non-odorous but it can be very loud. I am currently on a total of 60 mg of Ritalin per day just to function. I often add energy pills, purchased from places such as GNC, because the Ritalin isn't working. Yesterday, I took both doses of Ritalin and two energy pills, and I passed out on the couch after work. I work from 7:30am to 3:30pm, and my work day is nothing too crazy. I try to keep very consistent sleep hours and could easily sleep to 1:00pm or longer if I don't have to get up for something. I sometimes have short periods of energy in the mornings, but that is usually over by noon. The quality of my life is greatly affected. I don't want to go anywhere or do anything because I am way too tired. I'm trying to keep up with my exercising, but that is also a struggle.  I have a history of clinical depression for practically all my adulthood, but it has been very well managed for the last four years. The fatigue is currently causing a great deal of depression, but it is very different from the clinical depression that I use to deal with. When I don't feel sleepy and tired, I don't feel depressed. When the fatigue sets in, I feel very irritable and sad. I realize that the stimulants can cause irritability, but I don't feel irritable or sad when I'm not feeling fatigued.  I've only recently began to explore that the fatigue and the intestinal issues could be related. I have always accepted that I have a sensitive, cooky digestive track. The increasing, unrelenting fatigue is what has lead me to exploring the possibility that everything could be related. I did have blood work last November. My doctor did not test for anything Celiac Disease specific, but she did do a Vitamin D, ferritin level and overall metabolic panel. All of that is normal. My thyroid level is also normal, and I do take thyroid hormone because I had half of my thyroid removed 11 years ago due to what turned out to be a benign thyroid tumor.  I just saw my doctor two weeks ago, and she increased the dosage of my Ritalin. That has not helped at all. She has never mentioned Celiac Disease to me before. I made an appointment for this Friday afternoon to talk about it, but I keep wondering if I'm even heading in a direction that makes sense. I decided to post here for some guidance. I'm sorry this has been so long. I'm not really into cutting something totally out of my diet just to see what happens. I also feel like that if I have something that is poisoning my system, I need a real clinical diagnosis of that. I feel like maybe I'm grasping at straws now and imagining a correlation that isn't there. I am not looking for a quick fix, but right now I have no idea what needs to be fixed. I am open to any information and/or suggestions. Thanks so much!   Jennifer
    • Celiac disease sufferers or those who embrace a life without gluten can check out Canada's Gluten-Free Market when it makes stops in London and ... View the full article
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,673
    • Most Online
      3,093

    Newest Member
    KAN
    Joined